About Me

I am a girl who fell in love, got married and wanted to have a regular ol' ordinary family. What I ended up getting was everything but.
This blog chronicles our journey as a family who was blessed with a very special child.
From the day we found out that she had only a 5% chance of living to the present, life has been a true roller coaster of emotions. And most surprisingly, more rewarding than I ever thought possible.
Click here to contact me.

The Harlie Fund

Due to the requests of many caring people, our family set up a legal trust fund, "THE HARLIE FUND" to help with Harlie's care. You may click here for more information or click on the donate button above.

The Harlie Crew

We invite each fan of Harlie to join the following initial crew members and commit to make a monthly contribution to The Harlie Fund.

With Christy's willingness to share, we have worried about, prayed for and rejoiced in the accomplishments of a remarkable girl. The members of The Harlie Crew together show their support by contributing monthly. If you would like to join us, please call Bill Jeffries at (804) 288-1672.

Saturday, March 10, 2012

On Wednesday right before 5pm she asked to go to bed. Well, she signed "night-night". So, I put her in bed and she slept until about 8pm. Then she got up to for about an hour or so and then went back to bed. She had a fever. But she didn't seem too miserable, so I didn't give her anything for it. I wanted the fever to do it's job and kill whatever was brewing. I checked on her several times throughout the night to make sure she wasn't too hot. And by morning, the fever was gone and she was way happier.

Even so, I took her to see her pediatrician. He thought that she would most likely be fine by Tuesday. It's probably just a cold. But he put her on a 3-day course of antibiotics, just in case.

She seemed to be much better today. She still has some thick secretions, but we suctioned way less today than yesterday, so that's good. And no more runny nose, so that's good. And tonight when I was putting her to bed I asked her how she felt (not expecting an answer) and she signed "happy." So, I grabbed her communication device and asked her again. And she said "I feel happy." I told her that I was happy knowing that she was happy. And I can't tell you how true that is!!!

That is the first time that I've ever asked her that question and got a very clear and purposeful answer. So, so awesome!!!

I spoke to Katie again today about how Harlie was doing. I told her about the fever the other night and gave her a full update. She said as long as she continues to improve, we're good. But if she gets another fever, I have to call her. My fingers are crossed!

She also said that they are making another change in our itinerary. Because she has to have a CT scan with contrast on Monday and might need anesthesia to do it, they need to do the CT scan when the cardiac anesthesia folks are available. They are only available in the morning. If we arrive at 8am, there just isn't enough time to get her admitted, get a bed, get to CT, get an IV (for contrast) and attempt to do the CT without anesthesia (because she can't move while images are taken and we don't know if she'll be able to do that for the length of time required). By the time they do all that, and then decide she needs to be sedated, the cardiac anesthesia team will no longer be available.

So, we need to go up Sunday so she can get admitted, get a bed, and all that good stuff, ahead of time. I told Katie she must really miss us or something.

A few weeks ago we had to sign up for booth sales with Harlie's Daisy troop. You know, when you go to a store and you see the girls selling Girl Scout cookies? Anyway, I signed Harlie and I up for one tomorrow. But, of course, I did that way before I knew she would be having surgery this coming week. So, I've kept her out of school, she's on antibiotics and I am NOT exposing her to anyone sick. It's going to be about 40 degrees, give or take from 9:30-11:30. I'm thinking I don't want her out there.

And this would be why I try not to commit to anything. I'm not reliable. Period. So, I'm just going to go and not take her. It kinda sucks. No, wait. Not kinda. It does suck. But, it's just the way it has to be.

Then, to prove that I'm completely insane, we're going to look at a some Pug puppies! I'm not as excited as I was yesterday because two of the three puppies are now sold. Well, they are four weeks old and not ready to come home yet, but someone's already claimed them. And we can't get there until 4pm Saturday, so that last one could be gone before then. So, I'm trying not to get my hopes up. We'll just learn from this and use it for the next opportunity. I say that so calmly, when really I'm crying on the inside! I don't know why I want this puppy so bad. But I do. I just think this house could use a little more joy. We've been down in the dumps lately. Too much stress. And studies have shown that having a dog can greatly reduce stress.

How can you be sad while playing with this little guy?

Well, it is very late and I need to get to bed. As tired as I feel, sleep isn't coming so easily. The second I lay down, I think of 10 things I need to do that I'm afraid I'm going to forget if I don't write them down. Then last night, after I finally fell asleep, Cooper woke me up with, "Mommy, I need to go potty." WOW! Well, okay! So, it looks like we're making some good progress there!

Speaking of Cooper, he is so freaking polite it kills me! The other day his teacher told me that every time they have Creative Movement class (which is once a week, I think) when they are leaving the class he turns around, waves to the teacher and says, "Thank you, Ms. Julie!" And then Ms. Julie told me that sometimes he's more specific about what he's thanking her for and says, "Thank you for the hoops (or whatever), Ms. Julie!" They said he is the only kid that does that and they love it!

Then yesterday, my Mom came over and brought small gifts for the kids. After a while, she said to me, "Well, I have to go home now." And then Cooper came running through the room (not stopping) and said, "Thank you for my present, Nana!" and kept on running into the other room.

So, he overheard her telling me she had to go and - completely on his own - came to tell her thank you. That's just crazy. And completely adorable!

If I tell him, "good job, Cooper!" he says, "thank you, Mommy." And if he asks me to fix something and I do, he says, "Oh! Good job, Mommy!" And he always says "bless you" if you sneeze and if you say it to him after he sneezes, he says, "Oh, thank you, Mommy!"

The best part is the way he says, "Oh" like he's both surprised and impressed. He's turning out to be a very funny kid.

Murphy

Murphy is 13 and is in eighth grade. He is constantly making us laugh with his crazy sense of humor and wonderful imagination. He is a great big brother and adjusted with no problems to this role. He has been an easy kid to raise from the get-go (despite the fact he entered this world 5 weeks ahead of schedule).

Harlie Caroline

Harlie is 10 and is in fourth grade. She has Goldenhar Syndrome, VACTERL Association and a lung defect that required the removal of 2 lobes on the right side. After over 50 surgeries (4 of them open heart), she is remarkably age appropriate. She is the sweetest, funniest little girl I've ever met. You can't help but fall in love with her.

Cooper

Cooper is 8 and is in third grade. He is a very talkative, high energy and affectionate little guy. He is all boy and he is a very funny kid. We are so lucky to have him!

Rooney

Rooney was born on February 5, 2012. He has been a wonderful addition to our family. He is such a great little dog and I just can't imagine life without him now! I love him so much!!!